Aa
Mostly Neurological Now
I was diagnosed with subacute thyroiditis in October last year. As I shifted from hyper to hypo my TSH went as high as 6.5. At that time, my temp was always low, my skin dry and lots of fatigue, especially with exercise, nail ridges, brain fog. My TSH has now dropped to 2.55(T4 normal doc didn't take T3), and my temp is normal. My BP is near normal for me too (110/70). My fatigue is less. However now I have mostly neurological symptoms; muscle cramps in calves and feet, twitching all over, toe numbness (both feet), trouble staying asleep, headaches, random pain, oily skin. I was expecting to feel better. I was prescribed synthroid but stopped it after heart palpitations started. I had subacute thyroiditis before and was fine afterwards. I have been to a neurologist (EMG normal) and he says its just some S1-L5 disc compression, but I have had back problems before and this seems much different. I have also been to an infectious disease specialist and been treated with three weeks of antibiotics for Lyme.
This discussion is related to Subaccute Thyroiditis.
This discussion is related to Subaccute Thyroiditis.
COMMUNITY LEADER
I think The Lightseeker is more experienced with Lyme Disease than I am... while I know that Lyme Disease can affect thyroid function, I mostly deal with thyroid function and evaluating thyroid related labs...
Unfortunately, the labs you had done for T4 and T3 were for Total T4 and Total T3, so they are of little value.
Thyroid 101--- the body produces 2 main hormones, T4 and T3. It mostly produces T4 and very little T3. Of the T4 produced, most (about 90-95%) is bound by protein and isn't available for use. The unbound (Free) portion is what's available to be used. Free T4 can't be used directly by the cells; it must be converted to T3.
As with T4, most of the T3 produced is bound by a protein, which makes it unusable.. Again, the unbound (Free) portion is what is available to individual cells.
All of that said, the thyroid tests you had done, really tell us very little, since they are considered to be obsolete. Your TSH was at the high end of "normal", even though that's not what your lab report shows, because your lab is using an outdated TSH range. Over 10 yrs ago, the AACE recommended that the range for TSH be adjusted to 0.3-3.0... labs, therefore doctors, have been slow (to put it mildly) to respond.
Your Total T4 is less than the mid range, normally considered optimal for Free T4, which would lead us to suspect that your Free T4 would be even lower... With no T3, I can't comment.
Vitamin D of 19.1 is definitely deficient.. Low Vitamin D can cause some hypo-like symptoms, so of course, that needs to be brought up to normal levels... between 50 and 80 is considered optimal.
I checked the link for the B-12 elevations and it all sounds plausible until I see that your RDW is low, when it's typically high, with true vitamin B-12 deficiency. I'd say your labs were correct.
I know people who have had Lyme Disease who did not test positive, until given the proper tests, so I'm going to go out on a limb and say that your doctor had no idea what he was doing. Not all rashes will go away in a day, even with a steroid shot... but even if they don't, it doesn't mean it's Lyme, and thyroid and neurological issues can be caused by a number of things.. From what little I know, Amoxicillin is totally ineffective for Lyme Disease... for heaven's sake, it wouldn't even get rid of my kids' ear infections.. when my youngest (who is now 39) was about 2 yrs old a doctor handed me a script for Amoxicillin and I told him to keep it, because I wasn't going to buy another round that didn't work (at that time, antibiotics weren't free, like they are now). I can't imagine that a 3-week regimen of it would cure Lyme Disease, when I've known people who had to be on much stronger antibitotics (as The Lightseeker said, doxyclycline is preferred) for over a year.
As I said, you should not have stopped the Synthroid (generic is Levothyroxine; levo for short), simply because of heart palps. It's not the least unusual for symptoms to worsen or for new ones to appear once you get on a thyroid replacement hormone. Many symptoms are shared between hyper and hypo.
I would recommend that you get started back on the levo and stay the course, for a while -- it takes 4-6 weeks for the dosage to reach full potential in your blood, then, often more time for your body to "get well", once your levels are where you need them. Your body has to readjust once you're getting thyroid hormones that you've been doing without.
Keep in mind that sub-acute thyroiditis can become permanent... looks like that might have happened to you...
Unfortunately, the labs you had done for T4 and T3 were for Total T4 and Total T3, so they are of little value.
Thyroid 101--- the body produces 2 main hormones, T4 and T3. It mostly produces T4 and very little T3. Of the T4 produced, most (about 90-95%) is bound by protein and isn't available for use. The unbound (Free) portion is what's available to be used. Free T4 can't be used directly by the cells; it must be converted to T3.
As with T4, most of the T3 produced is bound by a protein, which makes it unusable.. Again, the unbound (Free) portion is what is available to individual cells.
All of that said, the thyroid tests you had done, really tell us very little, since they are considered to be obsolete. Your TSH was at the high end of "normal", even though that's not what your lab report shows, because your lab is using an outdated TSH range. Over 10 yrs ago, the AACE recommended that the range for TSH be adjusted to 0.3-3.0... labs, therefore doctors, have been slow (to put it mildly) to respond.
Your Total T4 is less than the mid range, normally considered optimal for Free T4, which would lead us to suspect that your Free T4 would be even lower... With no T3, I can't comment.
Vitamin D of 19.1 is definitely deficient.. Low Vitamin D can cause some hypo-like symptoms, so of course, that needs to be brought up to normal levels... between 50 and 80 is considered optimal.
I checked the link for the B-12 elevations and it all sounds plausible until I see that your RDW is low, when it's typically high, with true vitamin B-12 deficiency. I'd say your labs were correct.
I know people who have had Lyme Disease who did not test positive, until given the proper tests, so I'm going to go out on a limb and say that your doctor had no idea what he was doing. Not all rashes will go away in a day, even with a steroid shot... but even if they don't, it doesn't mean it's Lyme, and thyroid and neurological issues can be caused by a number of things.. From what little I know, Amoxicillin is totally ineffective for Lyme Disease... for heaven's sake, it wouldn't even get rid of my kids' ear infections.. when my youngest (who is now 39) was about 2 yrs old a doctor handed me a script for Amoxicillin and I told him to keep it, because I wasn't going to buy another round that didn't work (at that time, antibiotics weren't free, like they are now). I can't imagine that a 3-week regimen of it would cure Lyme Disease, when I've known people who had to be on much stronger antibitotics (as The Lightseeker said, doxyclycline is preferred) for over a year.
As I said, you should not have stopped the Synthroid (generic is Levothyroxine; levo for short), simply because of heart palps. It's not the least unusual for symptoms to worsen or for new ones to appear once you get on a thyroid replacement hormone. Many symptoms are shared between hyper and hypo.
I would recommend that you get started back on the levo and stay the course, for a while -- it takes 4-6 weeks for the dosage to reach full potential in your blood, then, often more time for your body to "get well", once your levels are where you need them. Your body has to readjust once you're getting thyroid hormones that you've been doing without.
Keep in mind that sub-acute thyroiditis can become permanent... looks like that might have happened to you...
Wow! Thanks. Impressive comments. You guys sound well-informed. I will try to answer as best I can:
1. I will ask Endo to take FT4 and FT3. My latest test on 2/21/2014, my TSH was 2.63 (.35-4.94), T4 8.2 (4.9-11.7), T3 (58-159).
2. My thyroid antibodies were normal. I had so many tests I can't find the actual results.
3. In August I was diagnosed with low vitamin D. 19.1 ng/mL. I have been on 2000mg a day since then and it rebounded to 45.3 (about a month ago).
4. Neurologist gave me a B12 test and it was actually high, 975. It was redone by my PCP and it had risen to 999. I had stopped taken supplements for over a year prior to the tests, so the high number doesn't make sense. High vitamin has many insidious causes. I have done some recent reading on 'Spurious Elevations of Vitamin B12 with Pernicious Anemia Elevations' http://www.nejm.org/doi/full/10.1056/NEJMc1201655. Essentially false high readings. Either an iron or B12 deficiency would explain a lot. I have consistently had a low RDW, but MCV has been normal. Basophil has been high a few times and MPV was low once in November, 2103
5. I didn't have a positive Lyme test. I had a rash in July. My PCP gave me a steroid shot plus pills, but it didn't help. I have had poison ivy before and steroids always got rid of it in a day. About 6 to 8 weeks after, I had flu-like symptoms (high fever, major fatigue, total body aches). That and the subsequent thyroid and neurological symptoms led the infectious disease doctor to challenge with Amoxicillin.
6. I have been taking 250 mg of magnesium citrate for about a month. I have also started back on a multi vitamin about a week ago
7. I will call the Endo about the Synthyroid (actually the generic, but forgot how to spell it)
8. I will take any info you wish to share. I am in NJ, so I should be able to find LLMD. I can't spend thousands on treatment though, so I hope insurance will cover it.
Thanks again. I appreciate the replies. Sometimes I feel like I am on my own and managing my own health care. My wife is tired of hearing about how sick I feel and I can't really blame her.
1. I will ask Endo to take FT4 and FT3. My latest test on 2/21/2014, my TSH was 2.63 (.35-4.94), T4 8.2 (4.9-11.7), T3 (58-159).
2. My thyroid antibodies were normal. I had so many tests I can't find the actual results.
3. In August I was diagnosed with low vitamin D. 19.1 ng/mL. I have been on 2000mg a day since then and it rebounded to 45.3 (about a month ago).
4. Neurologist gave me a B12 test and it was actually high, 975. It was redone by my PCP and it had risen to 999. I had stopped taken supplements for over a year prior to the tests, so the high number doesn't make sense. High vitamin has many insidious causes. I have done some recent reading on 'Spurious Elevations of Vitamin B12 with Pernicious Anemia Elevations' http://www.nejm.org/doi/full/10.1056/NEJMc1201655. Essentially false high readings. Either an iron or B12 deficiency would explain a lot. I have consistently had a low RDW, but MCV has been normal. Basophil has been high a few times and MPV was low once in November, 2103
5. I didn't have a positive Lyme test. I had a rash in July. My PCP gave me a steroid shot plus pills, but it didn't help. I have had poison ivy before and steroids always got rid of it in a day. About 6 to 8 weeks after, I had flu-like symptoms (high fever, major fatigue, total body aches). That and the subsequent thyroid and neurological symptoms led the infectious disease doctor to challenge with Amoxicillin.
6. I have been taking 250 mg of magnesium citrate for about a month. I have also started back on a multi vitamin about a week ago
7. I will call the Endo about the Synthyroid (actually the generic, but forgot how to spell it)
8. I will take any info you wish to share. I am in NJ, so I should be able to find LLMD. I can't spend thousands on treatment though, so I hope insurance will cover it.
Thanks again. I appreciate the replies. Sometimes I feel like I am on my own and managing my own health care. My wife is tired of hearing about how sick I feel and I can't really blame her.
Subacute thyroiditis is fairly prevalent in Lyme disease, which normally may persist for months but in some cases may result in permanent hypothyroidism, as Barb said.
So, there's a chance that it has resolved, however, the suspected LD could have progressed to Neuroborreliosis (Neurological Lymes Disease)
Have you been officially diagnosed with LD, or this just an ABX challenge?
If you were diagnosed with LD, 3 weeks of antibiotics, won't do it , if you
are stage 2 Lymes, which is likely to be the case.
Were you prescribed Doxycycline? (which is the preferred antibiotic according to most scientific literature I have read ).
Unfortunately infectious disease specialists adhere to the IDSA protocols,
which has become a subject of controversy, with great numbers of lyme's
patients going under-treated and having to find LLMDs (Lyme Literate Medical Doctors) for proper treatment. LLMDs, work usually under the radar, specially in Lyme-unfriendly states, so it might very difficult to find one where you live.
You may want to visit the International Lymes and Associated Diseases
Society (ILADS) website, for more information on this subject.
Presently, in the absence of classic hypothyroid symptoms and markers, your recent neurological symptoms, are more consistent with Neuroborreliosis, which needs to be ruled out.
Also look into possible underlying deficiencies, like D3, Magnesium and B12 but please exercise caution when supplementing, as the correct form
and dosage must be used.
Lab ranges, are usually too low in N.America,specially for B12. And testing serum levels of magnesium gives inaccurate results.
Tissue analysis for magnesium is required for accuracy.
Let me know if you need details.
I hope this helps, however, my comments are not intended to replace
medical advice.
Best wishes.
Niko
So, there's a chance that it has resolved, however, the suspected LD could have progressed to Neuroborreliosis (Neurological Lymes Disease)
Have you been officially diagnosed with LD, or this just an ABX challenge?
If you were diagnosed with LD, 3 weeks of antibiotics, won't do it , if you
are stage 2 Lymes, which is likely to be the case.
Were you prescribed Doxycycline? (which is the preferred antibiotic according to most scientific literature I have read ).
Unfortunately infectious disease specialists adhere to the IDSA protocols,
which has become a subject of controversy, with great numbers of lyme's
patients going under-treated and having to find LLMDs (Lyme Literate Medical Doctors) for proper treatment. LLMDs, work usually under the radar, specially in Lyme-unfriendly states, so it might very difficult to find one where you live.
You may want to visit the International Lymes and Associated Diseases
Society (ILADS) website, for more information on this subject.
Presently, in the absence of classic hypothyroid symptoms and markers, your recent neurological symptoms, are more consistent with Neuroborreliosis, which needs to be ruled out.
Also look into possible underlying deficiencies, like D3, Magnesium and B12 but please exercise caution when supplementing, as the correct form
and dosage must be used.
Lab ranges, are usually too low in N.America,specially for B12. And testing serum levels of magnesium gives inaccurate results.
Tissue analysis for magnesium is required for accuracy.
Let me know if you need details.
I hope this helps, however, my comments are not intended to replace
medical advice.
Best wishes.
Niko
COMMUNITY LEADER
What was your actual T4 result and was that Free T4 or Total T4?
While your TSH of 6.5 is over range, it's not horribly so, though it would be expected that you'd have hypo symptoms at that level, even with T4 in range... just because a result is "in range" doesn't mean it's what your body needs.
Heart palpitations can a symptom of hypothyroidism, as well as hyper, so you shouldn't have stopped the synthroid, on that basis, alone.
Have you had thyroid antibodies tested to determine if you have Hashimoto's?
Subacute thyroiditis can turn into a permanent condition, requiring life long medication.
You need to get your doctor to test Free T3 and Free T4, as well as TSH and thyroid antibodies.
While your TSH of 6.5 is over range, it's not horribly so, though it would be expected that you'd have hypo symptoms at that level, even with T4 in range... just because a result is "in range" doesn't mean it's what your body needs.
Heart palpitations can a symptom of hypothyroidism, as well as hyper, so you shouldn't have stopped the synthroid, on that basis, alone.
Have you had thyroid antibodies tested to determine if you have Hashimoto's?
Subacute thyroiditis can turn into a permanent condition, requiring life long medication.
You need to get your doctor to test Free T3 and Free T4, as well as TSH and thyroid antibodies.
Have an Answer?
You are reading content posted in the Thyroid Disorders Community
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
